Rare Disease Day 2023

 THE LAST DAY OF FEBRUARY IS RARE DISEASE DAY

The last day of February has become known as "Rare Disease Day". Today I am sharing some of the children who have a rare diagnosis. Please don't let their rare diagnosis scare you. These children may be nearly one of a kind, but they are just children, in desperate need of forever families, and often better medical care to support their needs. While looking at these photos and clicking on the links, research the conditions, and ask yourself if this could be your son or daughter! 

Adrien , Arnold Chiari Malformation

Allegra , Treacher Collins Syndrome

Andrew , Spina Bifida - family found!

Wynnston , Denys-Drash Syndrome

Deacon , Jarcho Levin Syndrome

Darla , Crouzon Syndrome

Ellowyn , Pyruvate Dehydrogenase Deficiency 

Faruq , Craniosynostosis

Felice , Tuberous Sclerosis - FAMILY FOUND

Fleet , Pyruvate Dehydrogenase Deficiency

Georgi , Spina Bifida

Hamlet , Congenital Myasthenia

Hannah , Encephalocele - FAMILY FOUND!

Hennes , Arnold Chiari Malformation, Spina Bifida - FAMILY FOUND!

Isaac , Craniosynostosis

Isla , Pierre Robin Sequence - FAMILY FOUND!

Jaida , Leukocyte Adhesion Deficiency - FAMILY FOUND 

Jeconiah , Alobar Holoprosencephaly

Lucia , Cornelia de Lange Syndrome

Morris , possible William's Syndrome

Noah/Nolan , Kleefstra Syndrome

Penny , Rubenstein Taybi Syndrome - on private until further notice

Petey , Congenital Hypoventilation Syndrome - FAMILY FOUND!

Roman , Fragile X Syndrome

Sadie , Progressive Ossifying Fibrodysplasia

Salvador , Norrie's Disease

Scotty , Spina Bifida

Viv , Epidermolysis Bullosa 

Clifton , Arnold Chiari Malformation

Eastyn , Spina Bifida - FAMILY FOUND!

Zeek , Spina Bifida - FAMILY FOUND!

Antony , Respiratory Distress Syndrome - FAMILY FOUND!